Life, Autism, Disability, and More

Because it’s one of those days…

Assorted colorful glass marbles arranged over a white background

I haven’t lost them yet…

Because it’s one of those days, I woke up after a really horrible panic attack last night, and I wanted to stay home and take a mental health day.

Because it’s one of those days, I decided that I should go ahead and force myself out of bed and to school.

Because it’s one of those days, I left school early to get coffee and sushi.

Because it’s one of those days, I had forgotten to tell Simon’s teacher that I’d be picking him up early, and so I texted her and warned her.

Because it’s one of those days, Simon (who didn’t know he had a doctor’s appointment) had been telling his teacher that Mom was picking him up to take him to the rodeo.

Because it’s one of those days, I picked up Simon to take him to the doctor for his yearly check-up and his physical for Special Olympics, and he wanted his teacher to see Mom’s black car.

Because it’s one of those days, at the nurse part of the visit, I found out he is only two inches shorter and fifteen pounds lighter than me.

Because it’s one of those days, I didn’t realize that I was jinxing myself when I said, “Wow, he’s never done that before” when he let the nurse take his temperature orally.

Because it’s one of those days, it wasn’t until we went into the room to wait for the doctor that I realized the crotch of his pants had split and his blue underwear was showing through.

Because it’s one of those days, I didn’t have to feel like a bad mother for not noticing his pants had split because it was time for Simon to get changed into a gown.

Because it’s one of the days, the wait for the doctor had been going on for seemingly forever when Simon announced, “I have to go to the bathroom.”

Because it’s one of those days, a second after Simon made the announcement, he began peeing…on the floor…through his underpants and the gown.

Because it’s one of those days, there was a lot of pee. A lot of it. Like the whole floor was covered in it.

Because it’s one of those days, even though I told him to stop peeing, he kept peeing. And peeing. And peeing. And peeing.

Because it’s one of those days, I quickly pulled off his soaked socks, threw some paper towels on the floor, and dragged him to the bathroom to finish peeing (assuming there was any left in him).

Because it’s one of those days, the doctor walked in as I was trying to toss paper towels all over the huge puddle of pee, and I had to warn her not to come into the room very far because in about two steps, she would have slipped and fallen, and that might have been a bad way to start the visit.

Because it’s one of those days, I had to repeatedly explain to the doctor that no, this wasn’t normal behavior, he doesn’t pee on floors everywhere we go, and, honestly, he is pretty well potty trained.

Because it’s one of those days, I had Simon show off by saying dog in four languages (well, five if you include English) to the doctor since I kind of felt I had to prove that he doesn’t just go around peeing on the floors.

Because it’s one of those days, after the doctor left the room to fill out his Special Olympics paperwork and he needed to put his clothes back on, it was full-on meltdown time because he did not, I repeat, did NOT want to go home without underwear.

Because it’s one of those days, it took me a minute to realize that he had to wear his pants WITH THE HOLE IN THE CROTCH without any underwear.

Because it’s one of those days, the whole of pediatrics got to listen to Simon scream, at the top of his lung capacity, that he wanted fresh underwear.

Because it’s one of those days, I considered taking him to Target and just buying some new underwear for him, but then I realized that would mean walking through Target with him in ripped pants and his balls hanging out (literally) while he screamed that he wanted fresh underwear.

Because it’s one of those days, I decided against taking him to Target because we would probably wind up being arrested for public indecency, and I convinced him that we could go straight home and then he would have fresh underwear.

Because it’s one of those days, since we’ve gotten home, I’ve had a hot bubble bath and some Ben & Jerry’s ice cream.

Because it’s one of those days, don’t you judge me.

I hate to be a Debbie Downer…

A rainbow of plus signs and people

Share it – spread the word!

Actually, strike that. I just hate the phrase Debbie Downer. Why does someone else get to label you just because you share some bad news?

Because I have news for you. And it’s bad.

Last week, there was another tragedy in the special needs world.

A 19 year old student who had autism and was non-verbal was found dead on a school bus.

He had left for school that morning, riding the bus.

He never made it to school.

His mother never heard that, though, and when he didn’t get home at his usual time, she called, only to be told he had been absent.

By the time she got through to the bus barn and had people looking, it was too late.

They found her son on the bus, dead.

At this point, there is no cause of death, and while the driver had been questioned, there are still no answers as to what happened.

This matters.

This matters so much.

Simon is only partially verbal. I never know how to describe his ability. He can speak, but his speech is limited. He can often tell you when he wants or needs something, but there is really no true conversation happening most of the time, and I don’t know that he’s always saying what he thinks and feels, as opposed to just sharing lines from TV shows or movies.

Would Simon speak up if someone left him on a school bus?


But would he know what to do if someone left him on the bus while he was asleep? Would he get off the bus when he woke up? Would he go look for help?

I don’t know.

I don’t know if I could teach him to do it, either.

Because of that communication gap, I can’t tell you what he would do. I can’t tell you how he thinks or what he thinks. I know that he thinks – he makes all sorts of connections, and he learns quite quickly – but I can’t understand his methods of thinking and making connections.

And that’s scary when news like this comes up, quickly flashes across the screen, and then is immediately forgotten about.

Where is the outrage? Where are the updates? Why aren’t other parents getting up in arms?

Well, probably because they’re tired.

Parents of special needs kids have worries like this all the time. They have to be on their guard, they have to be ready to jump up and fight the good fight, they have to worry. And that can really wear you down after a while. It’s hard to fight for other kids when you have your own kids to worry about.

Times like this, though, require that we get together, that we share the news, that we reach out to each other. We need to know it happens, we need to learn from it when it happens, and we need to see what we can do to stop it from happening ever again.

This means I need you, wonder-people who bother reading my blog. You need to talk to your kids, your friends, your neighbors, anyone you happen to encounter during your school journey. Make friends with your child’s bus drivers, teachers, admins. Do everything you can to spread the word about the tragedy and to use it as a lesson, to never let it happen again.

All it takes is one second

white roseI don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.

It’s horrible.

I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.

Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.

You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.

This is a fear of so many parents and caregivers of those who love someone with autism.

It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.

Children, and adults, can decide to run for no reason or for some unknown reason.

Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.

But not everyone can do that.

And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.

I won a set of dominoes, so I shouldn’t complain. But…

dominoesThe amorphous they out there often say that “you get what you pay for.” Sadly, they’re wrong. You often wind up losing out on the deal, even when it’s free.

I went for some parent training last week, and while I hate to speak ill of anyone who is trying to do good, sometimes you just gotta call people out when they’re straight out wrong, misinformed, or just unpleasant to deal with.

I am not going to name names in this blog. That’s not my point. My point is that you, as a parent, must be careful of what you listen to and what you believe. Do your own research. Talk to more than one person. And be warned – this is a loooooong blog.

A few things went on during this training session that made me want to share it, and made me want to make other parents aware that they need to go into everything with an open mind and a salt shaker. (Get it? Be ready with that grain of salt? Ah, I’m so funny.)

Anyway, here’s what went down.

The person running the training session began by telling stories of all her years working in and with school districts. All schools “cut and paste,” she said, so make sure that you don’t get someone else’s goals because the schools will make them all the same if they can.

She also made it clear that while she was, of course, a wonderful person and made sure that each and every child got what he/she needed, she personally would sometimes purposely write half-assed IEP goals simply to make her life easier. And she only did it to parents who didn’t know better, wouldn’t watch carefully, or wouldn’t judge too harshly. So, she told us, make sure that you know better because then no one will do it to you. Because, she said, “It’s thunder dome when it comes to your kids unless you have stuff written in their IEPs.”

Okay, to some extent, that may be true. I know that we have let some things slide because we knew the teachers, and we knew that if something wasn’t in the IEP, Simon would still get it. But we also made damn sure other things were in because we knew that, just in case, we needed it in writing. And we always knew that we could call an ARD to make changes if anything did happen to shift.

She also talked about getting kids ready for transitions and how you had to start transition planning at 12. If you hadn’t done that, then the school district was failing you. Since Simon is now 13, and we haven’t started transition planning, I guess that included us?

And speaking of jobs, she said that there was a “98% chance that you’ll never had paid employment if you haven’t by the time you graduate from school.” I don’t know where she got that number from because a study done in 2013 and reported on in the Journal of the American Academy of Child & Adolescent Psychiatry reported that “just over half (53.4 percent) of the young adults on the autism spectrum they surveyed had ever worked for pay outside the home within the first eight years after leaving high school. Only about one in five (20.9 percent) young adults with ASDs worked full-time at a current or most-recent job.” I’m not sure how that translates to a 98% chance of never having a job…but, hey, she’s the “expert.”

She pointed out the importance of having your child hold down a job because “you don’t want your kids playing with cars and trucks when they’re 21.” Except, ummm, maybe you do? I mean, I have no idea what Simon’s future holds, but if he’s unable to be employed, and if he’s happy and content doing so, what’s wrong with it? How many neurotypical “kids” that age have train sets or collect matchbox cars? How many “kids” that age are still into superheroes? I’m not sure that we want to denigrate what someone does. If they’re happy and able to do that, why make it a bad thing?

Obviously, I was already having some doubts that this was how I wanted to start my day.

She went on to tell us things, like how administration was overpaid; she advised that we look up the salaries of the directors of special ed programs so that we could be “outraged” by their pay. Think of how many teachers they could hire for that! And, she told us, there’s no reason to have curriculum coordinators. Another waste of money – money that could go to our children! They could hire three teachers for the cost of one curriculum coordinator. Three teachers for our children. Were we outraged yet?

By now, I wasn’t sure how fond of her I was. To be honest, I had seen her before, and I had gotten the impression that she wasn’t quite what she made herself out to be (a wonderful crusader), but after hearing her trash talking school districts, I wasn’t sure.

Don’t get me wrong; I think that school districts are often in the wrong. I’ve attended enough conferences and heard enough horror stories to know that school districts prefer to do what’s cheap as opposed to what’s right. In fact, about nine years ago, we had gotten a lawyer and gone after our son’s school district. But once the district got in a new head of special programs, everything suddenly got better, and it’s been better ever since. (I won’t lie and say that I haven’t heard complaints – but I haven’t heard any complaints that were borne out…they all appeared to be more of a difference of opinion or need.)

That all said, I was not really enjoying my morning.

Then it got better. And by better, I mean worse.

She handed out data.

After telling us, “I can’t do math, but let me explain these statistics to you…”

Well, I’m not good with math either, but I do understand how data works (mostly).

What she gave us was data on the STAAR Alt tests. We were told that we should be upset because, when looking at the data, regardless of grade level, it seemed that there were more boys, and more Hispanic boys, taking the alternate version of the test.

It’s all about how the schools are holding back the minorities, she told us. How the schools try to avoid working with boys. It’s nothing to do with, well, how numbers work out.

After reviewing what she said, I looked at the numbers on the sheet.

The page I had was the Summary Report for Grade 8 for the STAAR Alt 2.

The numbers:
All students who took it: 4,038
Male: 2,628
Female: 1,410

Hispanic: 2,028
American Indian/Alaska Native: 19
Asian: 127
Black or African American: 680
Native Hawaiian or Other Pacific Islander: 8
White: 1,099
Two or More Races: 58
No Information Provided: 19

Economically Disadvantaged:
Yes: 2,710
No: 1,314
No Info: 14

Yes: 24
No: 4,000
No Info: 14

Limited English Proficiency:
LEP: 436
Non-LEP: 3,587
No Info: 15

Participant: 5
Non-Participant: 4,017
No Info: 16

Participant: 170
Non-Participant: 3,853
No Info: 15

Then I did some research. Just Google. While sitting there. I didn’t have time to prepare. I didn’t get to do too much of it.

But what I turned up told me this: as of 2014, there were 5 million students in public school in Texas. Assuming that the percentage of special ep students hasn’t changed too much, then it would remain at about 8%, meaning that approximately 440,000 students in special education. That means that about 1% – the number of students that would be allowed to take the STAAR Alt 2 would be about 4,000 students. Sounds right so far.

Now let’s take that further.

As of 2013, Hispanic students made up 51% of the population of students in Texas public education. Taking that information further, we can do basic math. Fifty-one percent of 4,038 student is 2,059 students.

Hmmm. So the percentage is just slightly off. In other words, statistically, it would make sense for that to work out that way.

I tried to point that out to the presenter. I tried to say that perhaps the numbers make sense.

After all, when it comes to certain issues, such as autism, you have approximately a 4 to 1 (25%) odds that it will affect boys instead of girls.

Looking at gender, then, we have a 35% bias towards boys. A bit of a difference, but not a huge one, right?

I tried to point that out, too. To say that the numbers did make sense. That despite what happens if you look at them blindly, there is a bit of a reason why they skew the way they do.

She tried to say I was wrong. Tried to say that the statistics I brought in didn’t matter.

I let her know that my husband worked with statistics all day. I didn’t bother telling her that I had to study stats for two of my graduate degrees. I wanted to let her know that I had a clue, but I didn’t want to sound like I was showing off.

She told me that while my husband might be a “statition” (not actually a word, by the way), maybe he knew better, but she was just saying that it should be looked at. Yes, I agree. It should be looked at with an eye towards the actual science behind the numbers.

I didn’t bother bringing up the other facts that were in the numbers I listed above – that the number of students in ESL, migrant, LEP, and bilingual numbers could be responsible for the slight skewing. If there is a language barrier and a disability, that would make it extra hard for the student and might make the STAAR Alt 2 a more appropriate choice.

Okay, maybe I shouldn’t pick on the poor woman quite this much, but I can’t stand going somewhere and missing out on the facts and the truth. It’s one thing to have a personal bias and a personal belief, but when you present it as fact – as fact that you are an expert on – then you should be able to back it up. You should be able to speak to those facts. You should be able to give that information in a non-biased way.

None of those things happened that morning. I left before the Q&A, having wasted enough of my time getting frustrated, but then we have a lovely set of door prizes: used games. And that I can’t complain about because I got lucky and had first pick of the door prizes. I won a set of dominoes – a gift that Simon will enjoy playing with. So at least something good came of the morning.


colored tearsThis is probably the hardest blog – or anything else – that I’ve written.

Yesterday, Simon hit a limit. It wasn’t something that would bother most people.

Yesterday, Simon had to wait to go out to dinner. He’s bad at waiting. Very, very bad at waiting.

Yesterday, Simon melted down. He melted down hard.

He hit a point of no return, and he couldn’t stop himself. None of the usual things worked; he would not be distracted, he would not calm down.

Instead, he lashed out. At Patrick.

He attacked him as hard as he could attack.

He scratched. He pinched. He dug in his nails.

Patrick tried to restrain him, but each time he released Simon’s hands, Simon went for him.

Simon seemed to relax a little, said he wanted a big hug.

Went in for a hug, changed his mind half-way and began pinching Patrick’s stomach and sides.

Patrick tried to get out of the way, multiple times.

It didn’t work.

Finally, Patrick was able to sit and lean back far enough that Simon couldn’t reach him.

I got in the way, Patrick got out of the room, and since Simon has never scratched or pinched me, I hoped it would work out okay.

I turned out all the lights, got him to calm a bit, sat down and wrote out sentences about what was going on and what was happening.

After we’d finished a full page of sentences, he had calmed down to just crying.

Patrick had gouges up and down his arms. Slices in his skin, bleeding. The worst ones were on his hands where there were flaps of skin.

When Patrick came back into the living room, Simon was calm enough to apologize.

Simon was calm enough to go to the bathroom, to put on his flip-flops, to go to the car, to go to the restaurant.

Simon was calm enough to eat. To drink his orange juice. To come back home. To go to bed.

And everything was normal again. Like it never happened.

Except, of course, it did. And it might happen again.

Finding Shakespeare

yellow fishJust wanted to share a funny to remind all of you lovely, lovely readers that while life with Autism is not always fun, it has its perks and high moments.

When we were on vacation in Alabama last month, I found a little yellow fish in the sand. I think it’s a fishing lure, but I have no idea because I don’t fish. All I knew was that it was cute, and it said “Shakespeare” on it.

Deciding this was a sign from the gods of the beach that I should be writing, I brought it inside.

Simon immediately stole it away to keep in his room.

Okay, that’s cool. I let him have it because I knew that once it came time to go home, I could take it back and keep it on my desk. Chances were, he’d forget about it once he had access to all his little toys.

We got home. I put it on my desk. It stayed there for a good two weeks.

Then, the other day, I’m walking through the living room, and I see it sitting on the coffee table.

“Where did this come from?” I ask Simon.

He looks at me like I’m an idiot (which happens more often than I’d like to admit.)

“The table,” he tells me. Because, duh, it’s on the table.

“No, before the table, where was it?”

He stares at me some more. Again, I’m being an idiot.

“On the paper.”

Yes, yes, he’s right, to be exact, it was on the pad of paper before I picked it up.

“Before that,” I say.

And he just stares.

“Was it on mom’s desk?”

“It was on the table.”

Apparently, I was just too dense to get it. It didn’t matter that it was once on mom’s desk. It had been claimed by Simon, and it was his. The only thing that mattered now was that it was on the table with his stuff. His. Not mine.

I finally got it, put the fish back down on the pad of paper, and walked away.

I don’t think I’m going to get Shakespeare back anytime soon.

The meltdown at the thrift store…

School started on Monday!

Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.

Monday was good.

Tuesday was good.

Wednesday. Well. Wednesday was.

He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.

Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)

“Do you want to go run errands?” I asked him.

Errands? Shopping?

Oh, yeah, he was all in.

We went to the thrift store across the way.

And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.

Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.

He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.

He screamed more. He cried, tears streaming down his face.

Time to leave.

We got to the counter.

We had to wait.

Simon really, really, really did not want to wait.

He escalated in decibels, and he added in this little shrieking thing he does.

Now, I’m going to go back a bit.

When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.

I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).

He began slamming his hands down on the counter, shrieking.

I pulled his hands back, told him not to do it, and listened to him getting louder.

I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.

No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?

I was going to try to wait it out.

I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.

I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.

I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.

I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.

I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”


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